Written from the heart, this is the unadulterated truth of life with multiple chronic illnesses and being housebound. My life open for you to follow. Please join me

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Independence reborn

We have a working shower!! I know that may not sound like much to you, but after not having a shower for the past 10 days, it means the world to me, at this second. I know that I only shower twice a week normally, but I really missed sitting there naked and letting the water run over me. One of my carers are due here this afternoon and she can’t arrive soon enough for me. It turned out that it was a fault in the shower, not poor workmanship on behalf of Adams pal who fitted it for us. He was really not happy about going to him and asked for what we had been warned would be £86 if it were his fault. In some ways, it does make me think twice about using any friend, even when qualified, to do work for us, if it goes wrong, I think Adam would just bite the bullet, rather than ask for the money back.

I have to say that the one thing I am looking forward to more than anything, is washing my hair. I have been using a dry shampoo all last week, but although my hair doesn’t look too bad, I just hate the way that it feels. I don’t even know how to describe it, despite repeatedly brushing it, it still feels sort of thick and full of product. Mind you, I don’t normally put anything in my hair, other than dye, shampoo, and conditioner, so I’m not used to the feel of anything else, other than clean hair. Which reminds me, I really do have to dye my hair, the number of grays, are starting to get beyond a joke. Vanity isn’t one of the things that my health hasn’t removed. There are still odd things like hair, skin, and teeth, that bother me as much as they ever did. Old age really is a pain all of its own.

This is the last time that I will see the carers who have been taking care of me for the past six weeks. My assessment period officially ends today, and Karen, the lady who organises it all will be here to see Adam and me on Wednesday morning, to discuss where we go from here. I’m really sad to see the girl who is here today go, as she is a total sweetie, but she is one of the qualified assessors and it is more an everyday carer that I will have in the future. Which of course, means that I go right back to the beginning, and I will be teaching a new pair just what I need and exactly how to do it. I really don’t like the idea as I have just become comfortable with the pair that I have. For me, it’s hard work making those connections, especially as before they arrived, I had very much been on my own. They have changed my life dramatically over a very short period of time, which I am glad of, but starting again is daunting.

I know that I have actually adapted far better than I thought I would. I honestly thought that I was going to find it far harder, as I was so used to my splendid isolation, maybe too used to it. So saying I’m going to miss one of them, is a total flip in myself. I no longer want to throw them out of the house and actually look forward to seeing them, and not just because I get a shower. It is, though, one of the beauties of being human, we are far more adaptable than we think we are. These last few weeks, not just with the carers, but including the district nurses, have oddly made me feel as though I am actually back in control of my life. I thought that I was losing my independence, but I haven’t, oddly they have given it back to me.

I know that is the last thing I and probably you expected to hear. How can people coming into your home, to wash you, or give you enema’s, possibly do anything other than take your independence away from you? Well, it can. I used to spend hours trying to do these things alone, trying to work out ways to wash, ways to do it safely and puzzling over what to do for my bowels. My life was tied up in those two small things. They were relentless questions, a dilemma that dominated everything else. Now, they are small interruptions and once taken care of, I have my freedom to do the thing I want, on my own, without having to even think about them. They are now their problems. I let them work on them, think about them and work out how to get past the problems without a second thought from me. I can go about my life, knowing I’m clean, protected and that I have medical assistance, who will come to my home if I need them. That to me is a new freedom, a new independence, that I haven’t had for years.

There is one thing that I have learned from this whole experience, you have to plan it to suit you. I have two different groups of people coming here twice a week. Originally, the thinking was to have the Nurses here three times a week, but that was too often for me, not just medically, but mentally. After the fortnight of trying to work the two together, I rapidly discovered that I don’t have the energy to manage both in one day. Even with the Nurse here in the morning and carer in the afternoon, it was too much for me. Equally, having someone here five out of seven days, was too much. I felt as though my life was dominated by it and I had no space in it for me, or to just spend with Adam. I hit on the idea of the Nurse visiting on Monday and Thursday, as I already had the carers visiting on Wednesday and Saturday. This pattern allows for life to go on and for me to recover before the next round. It is now three full weeks that we have been working this way and it works. I still have my life, the one I’ve been living for the past 7 years, I have lost the problems that were driving me mad and slowly, I have begun to feel good about it all. If their presence in your life, isn’t working for you, it is never going to make you feel you’re still independent, just trapped.

Clearly, I am finding this whole business completely the opposite of what I expected and the more it is becoming part of my life, the happier I am with the whole thing. If it were really needed, I would now be happy to accept any other help. How I would fit it in, right now I’m not sure, but I know without a single thought, I wouldn’t be frightened by it, as I was just two months ago. If you don’t believe me, just go back six weeks and read your way forward, the change you will see is dramatic. So don’t be scared if you too need assistance to live, OK I know you will, we all are, but try to remember how I have found it and give it a go. It isn’t the end of the world, it’s just a bit of change to it and when it works well, it gives you a freedom you won’t expect.

14 thoughts on “Independence reborn”

Thank you for sharing your every day challenges here on your blog. It makes me realize how much we, as the health system, have failed you in many ways or have made some difference. I can relate to the experience of not having a shower for days. I agree – those dry shampoos aren’t exactly a solution, maybe using it for a day or two is fine but nothing can and will replace a good shower.

I am cheered up by hearing the happiness in your words! I am sure that any challenges to come with new carers are more like adjustments now, rather than challenges as your whole perspective has improved and your outlook more positive. I play brain games on luminosity and I bet if you played your flexibility and problem solving scored would be over the top!

I am happy this is working for you. The right caregivers can make all the difference. And even though you’ll have to break in someone new, you now have the knowledge of what works best for you and can direct them. Brava!

I am far more confident about these new carers, as you say, I now know what works and what doesn’t. I wasn’t looking for it, but they have given me a hope for the future that I didn’t think was there. 🙂

Thank you for sharing and having carers in is daunting, but if you have the right carers providing the right care and they respect your choice, this goes some way to diminish or remove the daunting feelings.

I wish you the best for your future care in allowing you to live your own life.